Are We All Just Paying To Die?

I wrote a post in September, Doctors Are Part Of the Problem, But They Can Also Be Part Of The Solution, about a terrible appointment I had with my (previous) primary care physician (PCP), in which I was degraded and basically accused of faking my illnesses. 

But then the situation got a little bit worse. 

BECAUSE I GOT BILLED FOR IT. 

Not only that, but it was a bill for $125 for an “extensive physical examination.”   

When I get bills, I pay them.  Even when the amount is painful.  Even when the bill gives me sticker shock and I see red.

AS LONG AS SERVICES ARE RENDERED.

But if you try and charge me for services that were not rendered – and that we both know clearly were not rendered – I will fight back. 

(Cue “Ferris Bueller’s Day Off” – This is where Leslie goes berserk)

All I received was a lecture, and a misguided one, at that.  And then, to add insult to injury, I was billed for it.

I still can’t get over it.  Clearly.  The gull of the doctor.  Apparently he didn’t realize who he was dealing with.

I was so angry that I handwrote a letter.  I just couldn’t stop myself. 

I’ve included the letter here, both pictures of the handwritten version (which I promptly sent) and the text so you can read it (names have been redacted).

***** 

To Whom It May Concern:

I will NOT pay this bill.  On this date, at this appointment, there was NO examination.  Nothing was done other than Dr. _____ yelling at me for no reason.  I was accused of faking my illnesses.  I’m sorry that your office staff sucks, but as a patient, that is NOT my problem, and should not be taken out on me.  You can send this bill to collections if you are that petty, but I will fight it.  If Dr. ______ cares at all about anything other than the bottom line, this bill will be wiped.  It’s the right thing to do and he knows it.  My _____has an established relationship with Dr. _____ and I don’t want this to impact their relationship.  However, if this bill does not disappear, there will be a big problem.  I’ve never been treated the way I was that day by any doctor ever.  And I’ve seen a lot of doctors.  I will not pay money for services that were not performed.  That borders on malpractice.  I sincerely hope other patients will not be treated the way I was.

Leslie Rott

*****

Should I receive a call from a lawyer or a collection agency, I will be happy to them exactly why this bill will not be getting paid, and why, quite frankly, this doctor should not be practicing medicine. 

Additionally, I recently learned that, bloodwork I had put off and then had done, even though I have since made the decision never to go back to this doctor, not only did not confirm his belief that I was faking my illnesses, but did confirm my belief that he believed I was faking my illnesses. 

He ran a variety of tests, including anti-nuclear antibody (ANA), which is a diagnostic test, a confirmatory test, for autoimmune diseases, like lupus and RA.  If he was really curious, this is a test that he would have run when I first started seeing him.  But no.  There’s something cold and calculated about him running that test when he did that makes the situation all the worse.

I always knew that doctors like this existed, but I had never experienced one firsthand. 

Aside from the moral problems I have with this entire situation, I also have a practical problem.  Unfortunately, sick people need doctors.  I am chronically ill, and as a result of this situation, I no longer have a PCP.  And based on my past negative experiences – although this one being the most negative – I’m not too excited about finding a new one. 

But I need one.  And it feels like a lot of work. 

So I am left to wonder.  Are we all just paying to die?

Are we all paying to stay well and avoid becoming ill at all costs?  And then when we get sick, are we paying not to die?  Which, in the end, leads to the same, unfortunate, inevitable conclusion?

My Bubbie passed away at 90, and was pretty healthy until almost the very end.  But I watched the end of her life become the most physically and emotionally painful, and also the most costly.  I am 31.  I am not healthy.  So by that calculation, I will pay and continue to pay not to die.  The most costly times, health wise, are still in front of me, and in the end, I will die anyway.   

I can only fear that in our fast approaching new political climate, this situation is only going to get worse.  We will get poorer quality services at a greater cost to us.  And in the end, we will be sicker for longer, and we will die, sicker.    

We’ve already seen what happens when people in power use it against those who do not have that same power.  I’m not trying to get political here.  But I am using my voice.  And unfortunately, even though one of my New Year’s Resolutions for 2017 is to get un-angry and to focus on the positive, one power I do have is not to stay silent and to expose medical “ills” where I see and experience them.  Therefore, I am sharing this experience, despite the fact that very little good can be found in it. 

Because doctors like this are not doctors at all.  They use their power for evil instead of good.  They give the medical profession a bad name.  They make patients feel badly about themselves, they accuse patients of faking their illnesses, when they, themselves, in fact, are playing the system.  They are charging patients for services they did not render in the hopes that no one will have the time, will be too sick, or will not pay enough attention to take a stand and fight back.   They also make those who are healthy feel that doctors are too cumbersome, so they avoid them at all costs, until they become sick and have no choice.  

Operating With A Serious Spoon Deficit

Lately I have been operating with a serious spoon deficit.

For those who don’t know, the idea of the spoon theory is that someone with a chronic illness has a limited number of spoons that they can use each day, and once those spoons are gone, they pretty much can’t do anything other than rest.

These days, I have lists of things I have to do that never all seem to get done when I want to get them done. 

People without chronic illness don’t understand, and they don’t realize that it literally means I could be out doing something and suddenly feel sick and like I have to lie down.

I’m running on fumes.  Less than fumes.  Not even on reserve.  My reserves are gone.

I can literally be stopped in my tracks.    

And it has caused me anxiety when I am not close to home but realize I am running low on spoons.  How will I get home?  Will I have to find a cab instead of the subway or bus?  Can I keep from getting sick, regardless of the mode of transportation?  Can I walk the half a block from where I get dropped off until I get into the apartment building?  

I don’t have copious amounts of energy.  I have to pick my battles wisely, and sometimes bow out of battles altogether.    

And this state of affairs bothers me a lot.  I don’t want to have limitations.  I don’t want to say no to things.  But I don’t have a choice. 

For most of us with chronic illness, our days are variable.  Some days are good – we have more energy and less pain – and some days are bad.

Some days all my spoons get me is out of a bed, a shower, and breakfast.  Some days – rarely – it’s like I am my healthy self again. 

For about the past two months, I constantly feel like I am coming down with something.  I get a cough, my throat hurts, I spike low-grade fevers, I get these weird skin rashes.  This is my immune system telling me it’s time to take a break.  But I can’t really.  So I buck my immune system, but I can’t buck my lack of spoons.

When the spoons are gone for the day, they’re gone.  And I can’t bank them from days when I don’t use that many.  It’s always a finite number of spoons. 

Say I start the day with 12 spoons.  On a day that I have school, my spoon count would look like this:

Get up – 1 spoon

Eat breakfast – 1 spoon

Get dressed – 1 spoon

Bus – 1 spoon

Subway – 1 spoon

Train – 1 spoon

Walk to class – 1 spoon

Class – 1 spoon

Eat lunch – 1 spoon

Class – 1 spoon

Class – 1 spoon

Walk to train – 1 spoon

Train – 1 spoon

Subway – 1 spoon

Bus – 1 spoon

Dinner – 1 spoon

Get ready for bed – 1 spoon

Count that.  That’s 17 spoons right there when my allotment for the day is 12.  Now wonder I am so exhausted all the time.

It’s stunning for me to realize how little my body can actually handle.  But it makes total sense…to me…at least…

It’s easy for people who aren’t chronically ill to be judgmental and use terms like lazy, aloof, or uncaring.  But those characterizations couldn’t be further from the truth.  Like I said, I would give anything to do everything I need to everyday and not have to take time off after a particularly hard or busy day. 

But that’s not the reality.

If you are not chronically ill: How much of your day would you actually get done if you only had 12 spoons and every activity costs you a spoon? 

What Happens When Your Medical Records Aren’t Yours?

You get a bill for $361.26.

I almost had a heart attack.  And then I burst into tears.  And then I got pretty freakin’ pissed off.

For that price, I could pay for 18 appointment co-pays with my current insurance.

I could do a lot with that kind of money, but I cannot afford to pay that for my medical records.

I wanted my medical records because I am moving.  And how was I supposed to know that my medical records over the past five years would be six inches thick, more than 1,000 pages?

When I got home one night a few weeks ago and saw a box from a health company in Atlanta, I figured surely that couldn’t be my medical records.  Then I picked up the box and it was heavy to the point where I knew it probably was.  And before I even saw the bill, I had a sinking feeling in my stomach. 

I feel like I am being punished because I have a complicated medical history.  It’s insane to me that these people look at this six-inch thick medical record of a 27-year-old, and rather than wonder what my life might be like as it is, they stick it to me even more.

And I was under the impression that if I was going to be charged more than $50, I would be contacted before they went ahead with processing my request.  That never happened.  Because if it had, I wouldn’t have been willing or able to pay that much. 

The other thing is that I poured through every page and found nearly 350 pages that were blank, only had the hospital logo on them, or only had the line about “electronic mail not being secure”.  There were 1,202 pages at 0.23 each.  I accounted for those, which included the 350 garbage ones I just mentioned.  But then there were 20 pages at $1.16 each and 30 pages at 0.58 each.  I couldn’t account for those.

But the real question is, besides how I was going to pay the bill is how can I be a responsible patient if my medical records are in Michigan and I’m in New York?

How is it possible that I have to pay for my own medical record?

This is the kind of thing that, as the chronic illness community, we cannot stand for. 

We have to speak out when injustices like this happen to us.

And I know I am not alone in these experiences.

When you can’t afford your medication, medical records, or something equally important regarding your health, it causes “good” patients to become “bad”.  It sabotages a patient’s quest for health, and can have deadly consequences.

I waited to write about this until the situation was resolved.  I didn’t want to hurt my chances of a decision in my favor.

Ultimately, I was bounced around between the medical records people in Michigan and the company that copied them in Atlanta.  Maybe if this were all done in Michigan, it wouldn’t cost so freakin’ much.

The person in Atlanta said that they didn’t know why I hadn’t been contacted ahead of time and said they had to call Michigan.  Almost a week went by without hearing anything, so I took matters further.  I knew that the worst that could happen was that I would be told I had to pay the full bill.   

So I contacted the Better Business Bureau.  The situation was stressful enough that I didn’t really trust myself to handle getting bounced back and forth, which seemed to be inevitable.

And this is the way a lot of health situations get handled.  You get bounced back and forth, the system hoping that you’ll just give up.  But when you feel you are being disenfranchised, you can’t just give up.  It allows the system to perpetuate the problem. 

This isn’t even really about this one incident anymore.  It’s about the fact that the financial burden of health-related expenses is making it impossible for some people to take care of themselves. 

I often think back to the fact that if I wouldn’t have had built-in health insurance from my graduate program, I probably wouldn’t have had health insurance otherwise, and I probably wouldn’t be alive right now.  That’s a sobering thing to think about. 

So fast forward five years later, I am alive, but being financially raped to gain access to my own medical records.  It’s just totally insane and surreal.   

It’s never fun to get a bill that you’re not expecting, especially when it’s for paper.  The worst part is that these people know how important my medical record is to me.  And I guess they figured they could totally take advantage because they know I need it.

Because let’s be honest.  Healthy people don’t need their medical records.  And if they do, they aren’t 1,200 pages long. 

I think that if you are going to be charged for your medical records, there should be a limit on how much they can charge you. 

Ultimately, it was determined that I should have been contacted ahead of time before the order was processed and because I wasn’t, the company changed the bill to $50.   

This felt like a huge victory for me.  But the thing is, I probably would not have gotten a resolution if I wouldn’t have contacted the Better Business Bureau.  So if you’re wondering if they deal with medical-financial disputes, they absolutely do.  I’m not for blowing smoke if there’s nothing to blow smoke about, but I do believe in looking out for yourself when companies/hospitals/insurance/pharmaceuticals are taking advantage.  And I very much felt that is what happened in this situation.   

So, in case you’re curious, this is what five years and 1,200 pages of medical records looks like.  Enough said.